IBD support thread

[AMillionPeopleCheering]

Come here for support and help. Patients and family welcome.

Sorry @Bubbletrouble2 - only just seen your posts from today.

I must admit that when it first started happening to me I probably needed to wait a few months for a colonoscopy.

The main thing that helped was really cutting out almost all fibre from my diet and eating as little as possible. Just v digestible stuff like bananas and avocados.
It's grim until the medication begins, but eating very small amount of bland foods is better than the alternative.

Hi all it’s me again so my husband has a colonoscopy on 2 weeks.. with IBD is jelly like substance normal with the poo ? We are freaking out .. please anyone reply 😭

Is it bloody jelly? Is he in serious pain? If so possibility it could be an obstruction /folding of the intestine which is an emergency. It is extremely severely painful though, in waves.

When I had my very bad flare, I had lots of bloody jelly/mucus in my poo. If this is new, though, try to at least speak to a GP or to the IBD helpline at your hospital.

hey he is in no pain at he’s jus very tired … but he’s stools look very jelly like.. @spiderlight yeah it’s like red jelly mucus type thing I cannot explain it …

Its par for the course with a bad colitis flare unfortunately.

He'll be feeling tired due to the blood loss. I swear by spatone and floradix to get my iron and nutrients in check during and after a flare up.

Is he trying the no fibre, easy to digest diet?

Hi I’m so scared my husbands stools are flat and have blood steaks don’t know if this sounds normal with ibd???? He has a colonoscopy Tuesday but just want to ask if anyone else had this

I don't have IBD myself @Bubbletrouble2, but my 12yo son has Crohn's Disease. He didn't have any formed stools at all when he was diagnosed, so I don't know about flat stools, but the blood was very much a feature. I hope all goes well for your husband on Tuesday. It's so scary and I know how hard it is not to let your mind run off in all directions

Thanks for ur reply . I am very scared for him so I can’t begin to imagine what he’s feeling like 💔

Hi can I join the thread please? Diagnosed recently with IBS, colitis. Extremely anaemic last year and to have an iron infusion and then a blood transfusion as lost so much blood. Am panicking as I feel exhausted last couple of days and so worried the anaemia is back, not had much blood loss since last summer and regular blood tests showed iron, ferritin and HG all ok. Struggling to get my head around the diagnosis, I don't want to be the person with this condition, I know that sounds pathetic but I've always been pretty healthy. How do you learn to accept it? I appreciate things could be a lot worse in life but even so.

Hi Bluegloves! Welcome to the thread.
If you are recently diagnosed it can take them a while to sort out your treatment. What meds are you on? Do you have a number for the IBD nurses? I rang a lot in the early days!

Hi all, also wondering if I can join please? I have Crohns. Does anyone have any experience of where to go next when Humira and Infliximab haven’t worked. At least, they did work for a while but then stopped or I reacted badly to the meds.
Thanks for posting @Blueglovesand, it made this thread pop up in my feed! I hope you feel better soon. I haven’t had anaemia myself so not much help there I’m afraid, but I do find the condition wearing anyway.

From memory infliximab and Humira are very similar. DS (15) has Crohns and moved from one to the other and I was told that it was unlikely to make a difference, but needed to be tried out. He's on ustekinumab now. Which was great for 18months, but he's in a massive flare now and moving to another drug is under discussion.
Fatigue is DSs biggest struggle, his iron is fine but he's shattered all the time. It's often the first sign of a massive flare on the way. Nothing much has helped manage it, so welcome any tips!

Thank you @turkeyboots. I hope things improve for your DS soon. No real advice except I found being stressed at work a trigger and needed to make changes there.

I know people have different approaches but 30 years in (UC) i’ve just had my best ever 18 months following a grain free/ low carb diet and taking both marsh mallow root and Boswellia. The latter currently in clinical trials for UC. I also take collagen, magnesium, vit C, zinc and turmeric in a bid to keep de-inflamed, appreciate this type of approach is not for everyone but following a severe allergic reaction to a biologic during my last hospital stay I had to rethink. Sharing in case this is useful for anyone, this has been my longest flare free/ symptom free period ever.

Is humira the brand name for adalimubab?

Yes, sorry, I should have said.

Yes I totally concur @Thesoundofmusic23

Low carb is the main diet alteration that keeps my ulcerative colitis at bay the most effectively.

I can't manage it all the time because I love pasta, bagels, crumpets, toast, crisps and poppadoms - but if I can keep my carbs lowish, it does wonders for managing the UC.

Thank you. I’ve also had an anaphylactic reaction to a biologic and not sure what to do now. Are you managing your symptoms through diet and supplements alone or do you take some other medication too if you don’t mind me asking?

Hello, this is a timely thread as I'm really struggling with the lack of support.

Diagnosed 20plus years ago with Crohn's. I've had a couple of notable flare ups worthy of the devil's tic tacs (nice) but was mostly, luckily, managing on daily asacol.

But last August I went down hill badly and I've mostly been house bound as I seem unable to get my current flare up under control after weeks of pessaries and now two months of Cortiment. I'm bleeding a lot, running to the toilet 12-20 times a day (and waking up at night to go several times). It's exhausting.

On top of that, a routine gynae trip has revealed a very large fibroid in my uterus. I'm waiting on an MRI before they will give me a hysterectomy which they tell me I need and will mean reopening the scar I have from open surgery three years ago to remove a different large growth (and my ovaries) three years ago. Trouble is the waiting list for any of this looks like two years. A fibroid can impact the bowel...

And the steroids meanwhile are apparently making the fibroid bigger. I had blood tests two months ago, thanks to hospital IBD nurses, so I assume any cancer markers would've been picked up then? I called the hospital to get my results to find out they'd written to my GP to say I needed iron tablets. My GP didn't bother telling me that. (He is useless - if you can get him at all, his response to most things is "go to A&E").

Then, when I called the gynae consultant to tell him about the crohns flare up, his secretary told me off for seeing a bum consultant in a different part of the city (where I used to live) and that "I shouldn't be seen by them, they should be turning me away". Seriously, I'm just so drained by the whole thing. Our system is so broken and the people working in it seem so desensitised and indifferent to their patients. I just don't know how I'm going to get the help I need.

The only meds I take now are Mesalzine daily 2400 as I have done for many years. Am now wondering if I might in time ditch this too.

After infliximab and adalimubab there are still quite a few options for Crohn's . There are different medicine categories that work in slightly different ways, which you can tell by the suffix at the end of the medication. (The -ab ending Tells you that inflix and Ada work in similar ways). My DD is still on adalimubab so I don't recall all the names but your consultant should talk you through and I would imagine you wouldn't necessarily be anaphylactic to a different category of medication (like skyrisi, off the top of my head).

I was diagnosed 25 years ago with Crohn's. Am now 45 and hormones all over the place so that's having an effect. Had a resection operation 20 years ago and been on and off meds but generally off. Always have symptoms though. Sending solidarity to fellow IBD sufferers, it's tough.

My DD16 was diagnosed with UC and suspected Crohn's age 12 after a very traumatic hospital admission right in the midst of the pandemic/lockdown.

It had been so difficult getting her in front of our GP and even A&E just brushed us off and sent us home but a week after that she was so ill I cried down the phone to the GP receptionist and got an appt. GP took one look at her and told us to take her straight to hospital , bypassed A&E and he booked her straight into the children ward. We nearly lost her that night - I think the GP saved her life by acting so quickly to get her admitted.

It's been a bumpy four years but the medication level now seems to be fine for her. Aza and Infliximab infusions every 6 weeks and she hasn't had a flare for two years now.

No hair loss issues but she has developed arthritis and she gets back pain so bad it makes her vomit.

Mental health has been affected badly ( PTSD from when she was first admitted to hospital) and she is now also on antidepressants.

She's done amazingly though. Managed to get through her GCSEs , has a part time job and is on a level three college course too.

It is such an awful disease that is very overlooked and misunderstood.

Sending strength to everyone who is living with this.